LUPUS EUROPE – INFO CENTER

On this page, we want to share some key information and links that we found particularly relevant for people living with lupus in Europe. These can be recent scientific publications, information, news from our members, old articles that are still very valuable today. we will update this selection as new articles pop up, so come back regularly…

While we do our utmost to select credible sources of information and quality publications, the articles and links reflect the views of their authors rather than of LUPUS EUROPE.

LATEST LUPUS EUROPE NEWS

See our latest Blog articles, initiatives or projects.

Living with lupus in 2020 - SURVEY PUBLISHED

Thank you to the 5922 respondents

Hydroxychloroquine Dosing survey

Our survey on HcQ dosing, retinopathy and adherence is published in Lupus Science and medicine!

Anifrolumab

Anifrolumab has now been approved by the European Medicines Agency (EMA) as an add-on therapy for the treatment of active, moderate to severe SLE

Lupusreference TWEETS

Prof. L. Arnaud is very active on twitter, often with recent news in 1 slide

EULAR on Vaccination

Read the updated EULAR recommendations for vaccination of people with an autoimmune inflammatory rheumatic disease

WANT TO MAKE A POSTER?

See attached Simon Stones slides explaining how to make a poster for a scientific event!

COVID impact on rare diseases patients

look at the attached infographic made by EURORDIS based on 6945 answers

This is Living

Go to the campaign's autoimmune conditions webpage!

Do you know ERN ReCONNET

This is the European Reference Network responsible for lupus

VACOLUP Study

Learn about the Tolerance of COVID19 Vaccines in Lupus Patients

EULAR 2021

Read Our Top Takeaways from EULAR 2021

EULAR 2021

Summary of Key Abstracts on Lupus Treatment - by Prof. Arnaud

What are ERNs?

Find out about Patient Involvement in the ERNs

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LUPUS EUROPE
3 days ago

🇨🇭 Spotlight on Lupus Switzerland!

At our #lupusconvention, Lupus Switzerland presented a powerful poster showing the cover of their latest magazine, highlighting their commitment to diversity and inclusion within the lupus community.

🧑‍🤝‍🧑 Although around 9% of their members are men, this was the first time in more than ten years and 22 issues that the topic had been addressed. A meaningful step towards ensuring everyone feels seen and represented.

🖨️ With more than 600 copies printed and distributed, this initiative helps raise awareness, challenge assumptions and promote inclusion across their community.

👏 Congratulations to Lupus Switzerland! ... See MoreSee Less

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LUPUS EUROPE
6 days ago

🚨 Have you ever felt that your symptoms or treatment needs were taken less seriously because of your body size?

😪 For many patients, discussions about symptoms, pain, or treatment options are overshadowed by weight. Medication side effects, inflammation, fatigue, and reduced mobility are often ignored, while responsibility is placed on the individual. This can have real consequences for clinical decisions, referrals, and quality of care.

🌈 We are extremely proud of our Chair, Jeanette Andersen, for addressing this reality in her article “More Than a Number: Weight Bias in Rheumatology Care”, published in the special #EMEUNEWS issue on #Obesity and #RheumaticDiseases.

Thank you, Anastasia Madenidou and EMEUNET, for giving space to this important perspective and for inviting Jeanette to contribute.

Read the full article here: emeunews.org/2025/12/10/more-than-a-number-weight-bias-in-rheumatology-care/ ... See MoreSee Less

🚨 Have you ever f
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LUPUS EUROPE
1 week ago

📌 Reminder for our Youth Group Webinar!

🚫 Alcohol, recreational drugs & lupus: what are the risks?
🌟 What young people living with lupus need to know to protect their health.

Lupus Europe’s Youth Group invites you to an open, evidence-based discussion with Dr Luca Moroni focused on how alcohol and recreational substances can interact with lupus, treatments, and long-term health.

We will talk clearly about:

🚨 Known risks and current uncertainties
🚨 Interactions with lupus treatments
🚨 Real-life situations often left out of the conversation

😱 Why talk about this?

Because young people sometimes make choices that can carry real health risks, and they don’t always feel able to tell their loved ones or doctors everything.

‼️ Alcohol and recreational substances are part of many social environments. When lupus is involved, lack of reliable information can increase risks.

💁‍♀️ Talking about this before helps:

•⁠ ⁠Reduce avoidable risks.
•⁠ ⁠Encourage safe and informed decisions.
•⁠ ⁠Create a safe space for questions that are often left unasked.

🌈 That’s why this webinar exists: to anticipate real situations, NOT encourage them, and provide clear, evidence-based information for young people living with lupus.

🗓 29 January 2026
⏰ 19:00 CET
💻 Online

📩 Register now by emailing secretariat@lupus-europe.org

⏳ There’s still time to join! ... See MoreSee Less

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2 weeks ago

🇳🇴 Spotlight on Lupus Norway!

At our #LupusConvention, Lupus Norway shared how they continue to support people living with lupus through information, education and strong collaboration with healthcare professionals.

🏥 Every year, the University Hospital in Oslo organises a meeting for patients with connective tissue diseases, including lupus. Lupus Norwa has an information stand that offers reliable resources and answers questions from anyone interested in SLE.

📘 They have also published two new brochures to help patients better understand and manage life with lupus.:
“Practical tips for improving your daily life” and “Find out more about SLE”.

📰 To keep their community informed, Lupus Norway publishes a newsletter twice a year, focusing on key lupus-related topics such as research projects, sun protection, and patient stories. They also share updates about their participation in conferences and meetings, including EULAR, helping members stay up to date and engaged.

👏 Congratulations, and thank you, Lupus Norway, for your commitment. You are a great example of how patient organisations can make a difference ... See MoreSee Less

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